Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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New Book on ME/CFS by Naheed Ali

Discussion in 'General ME/CFS Discussion' started by JaimeS, Sep 8, 2015.

  1. JaimeS

    JaimeS Senior Member

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    Hey guys, I found a book about to come out called
    Understanding Chronic Fatigue Syndrome: an introduction for patients and caregivers


    Didn't see it anyplace else, so I figured I would post the link here. This is the first thing I've posted that isn't a study, so I hope I'm in the right place. :)

    Recommends graded exercise therapy, for one thing.

    Regarding depression, Dr. Ali is more circumspect. He says it is a common comorbidity, but that the connection is 'controversial', and even knows that PWME may need far lower doses of anti-depressants than the general population. "In some cases, CFS sufferers can't tolerate the usual doses...."

    He does state that PWCFS are far more likely to be depressed than people with other illnesses. Any idea where he could be getting that impression? The only studies I've seen that compare one illness to another re: depression incidence showed no increased correlation. Of course, he could be talking out of his derriere, as so many do!

    The tone is generally sympathetic: he makes some comments that with the way that PWCFS get indifferent or uninformed clinical care and the accompanying difficulties, depression may develop reactively.

    There are a few comments about differences between CFS and clinical depression; for example, cortisol reaction is lower in CFS patients.

    Finally, there is a discussion about episodes of anxiety and/or depression preceding onset. I have wondered about this myself. During our (very controversial) discussion about whether we were experiencing depression or anxiety as part of our ME/CFS picture, a lot of people said "at one time, but not now" and a handful of people stated that they had experienced anxious and/or depressive symptoms that were very atypical for them right around onset, but that these had tapered off. I had never seen this cited before this book, though I feel like practically any biopsychosocial understanding of ME has poisoned the well to the point that I view any discussion of psychology as it relates to this illness with the most gimlet of eyes (non-English speakers: VERY suspiciously!)

    Overall the book is 'all right', but I wonder if it's tempered with the understanding that it's geared towards patients and their families. It seems to be built on the same psychosocial model as its forebearers.

    -J
     
    Last edited: Sep 8, 2015
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  2. Gijs

    Gijs Senior Member

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    Even anxiety and depression can be due to 'infection' of the brain. These symptoms are (in that case) not psychologial but neurologial. If you have anxiety or panic attacks without any reason this is physiologial. They really don't understand CFS/ME at all. Chronic fatigue is 'just' a symptom.
     
  3. Bob

    Bob

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    This English speaker needed a translation too! :) Not heard that one before!

    For future reference, the 'other health news and research' section is for news not related to ME/CFS. If you have ME/CFS general news, rather than ME/CFS research news, we have the 'general ME/CFS news' section. There's also a 'general ME/CFS discussion' section to highlight ME/CFS stuff that is not exactly news.
     
    Last edited: Feb 27, 2016
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  4. JaimeS

    JaimeS Senior Member

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    Thanks @Bob ! :)

    -J
     
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  5. Effi

    Effi Senior Member

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  6. Valentijn

    Valentijn Senior Member

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    It used to be quite the fad to use inappropriate questionnaires in inappropriate manners to supposedly diagnose chronically ill and disabled people with depression, anxiety, and psychosomatism. These questionnaires ask about symptoms, thoughts, and behaviors - many of which will score points based solely on biological symptoms and limitations.

    And to make it a little more disgusting, they would often ignore the intended thresholds for diagnosis of psychological disorders implemented for those specific questionnaires. Instead they would show that ME patients score a few points higher (but still too low for a diagnosis) and conclude that they are more depressed - even if actual scores are not high enough to indicate depression.

    As an example, the Hospital Anxiety and Depression Scale (HADS) from England:
    We generally do pretty normally on that anxiety scale (though being at ease and relaxed can be difficult with chronic pain), but tend to get slaughtered in the depression section. Many of us cannot do the things we used to do, so we obviously don't enjoy doing them anymore - but we enjoy different things instead. Laughing and cheerfulness are a bit harder when disabled, uncared for, and treated like crap by doctors and society. And obviously we don't move as fast! I also doubt most of us spend much time on styling our hair or wearing make-up - it's a frivolous use of very limited resources. And many of us can no longer handle reading books, or even watching programs, due to cognitive dysfunction.

    The General Health Questionnaire (GHQ) is another inappropriate one, as is the Beck Depression Inventory (BDI), if I recall correctly. PHQ and GAD-7 also look problematic. The ones which explicitly test for psychosomatism usually require that there be legitimate anxiety or similar in addition to having "too many" symptoms, but are probably not being used that way by certain researchers. And then there's the Behavioral Response to Illness Questionnaire (BRIQ), developed by the UK CFS quacks specifically to demonstrate how crazy we are.

    Noticing these methodological problems requires 1) reading the paper making the claims of depression, and 2) reading the questionnaires used. Yet many well-intentioned people like Dr Ali are either lazy or not very bright, and believe everything they skim in an abstract. So they believe the highly spun claims of increased levels of depression, anxiety, childhood abuse, etc, etc, even when better quality research has long since disproven those claims.
     
  7. minkeygirl

    minkeygirl But I Look So Good.

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    I always wonder why some one, who no one has ever heard of, speaks with authority on some disease.

    As @Effi said he seems to understand alot! Lol.
     
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  8. alkt

    alkt Senior Member

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    they understand the world of publishing likes to make money from so called self help books a world that is full of snake oil salespersons
     
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  9. alex3619

    alex3619 Senior Member

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    I used the link and skipped the text for the index. No mention of Rituximab, nor SEID, nor IOM. Its probably been in the works for a while, or these were simply missed, whether by accident or intent. I wonder how much of the controversy over GET was discussed as well.
     
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  10. JaimeS

    JaimeS Senior Member

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    I searched "graded exercise" and "depression" as phrases - I figured I'd know right away what his intentions were.

    He recommends GET wholeheartedly so far as I can tell via search term.

    -J
     
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  11. SOC

    SOC

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    Another person with more desire to make money than understanding of a medical condition. This guy clearly thinks he's the wise man who can tell all kinds of other people how to help themselves -- without having to dive into the fray and actually help patients himself. Or he just knows he can make a lot of money this way without working very hard. Read a few readily available resources and regurgitate the results as a so-called self-help book. BFD.

    Anyone can sound sympathetic. That's just sales technique. Wessely is very sympathetic about our "very real illness". That doesn't mean he believes we have anything other than a psychosomatic illness. Sounding "nice" and sympathetic doesn't mean they believe us one tiny little bit or are truly willing to help us.

    The only self-help books I would give any credence to whatsoever would be ones written by top biomedical clinicians (not psychologists or psychiatrists) who have treated ME patients for years. They (other than patients) are the only ones who have any real understanding of what living with ME is like.
     
    Last edited: Sep 9, 2015
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  12. Eeyore

    Eeyore Senior Member

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    I think there is a link to depression, at least in me.

    For example, I had a bad reaction to a vaccine (inactivated) in March of 2014, which put me in a bad relapse from which I have not recovered.

    After I got it, I got immediately, severely depressed - borderline suicidal at one point. It's the worst I've EVER been. It lasted about a week, then poof, woke up, and it was gone. Back to my emotional norm. It was freaky - and not fun.

    The other symptom I got at the same time was constipation, which was more persistent. My PCP and I did some investigations on this, and based on my own interpretations of some of Dr. Hornig's work, I suspected that the kynurenine cycle was involved, that tryptophan was being consumed by IDO and shunted away from serotonin production. When tested, my serum serotonin was actually quite low.

    There is a disease called carcinoid syndrome, in which people have a kind of neuroendocrine tumor that produces a lot of serotonin. The symptoms are flushing and really, really bad diarrhea. Intestinal motility is regulated to a substantial degree by serotonin receptors in the gut. I seemed to experience the opposite of this - low serotonin leading to reduced gastro motility.

    My PCP prescribed low doses of trazodone. It was extremely effective for motility issues, but I got severe psychomotor agitation (couldn't stop moving my legs). this was a 1/4 of a 50mg pill per night - which is a very, very low dose. I think there is a reason that ME patients tend to have an extreme reaction to antidepressants and need lower doses. I wonder if our bodies have become acclimated to lower serotonin, so that we have more sensitive receptors or greater receptor expression. It would be interesting to measure expression of serotonin receptors of different types in different tissues in ME patients and healthy controls (and depressed patients).

    So I think serotonin and the kynurenine cycle are involved. As I've said before, I'm not a mind body dualist. I think it's all one thing. I think the kynurenine cycle is involved though and may be causing depression via serotonin depletion. Mayo has found that in POTS patients with motility issues prozac is effective, which is interesting, and consistent with this idea. It's not a direct agonist but it amplifies the activity of serotonin by preventing reuptake. Trazadone is a direct agonist.
     
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  13. dannybex

    dannybex Senior Member

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    I think you're correct.

    It's my understanding that tryptophan may go low if there is insufficient niacin in the body -- tryptophan is broken down to supply the niacin, which involves the kynurenine pathway. Interesting that diarrhea is one of the classic symptoms of niacin deficiency, and also some have suggested slow motility as well (because of it's need for gastrin production).

    Perhaps niacin becomes deficient for a number of reasons, but the key one might be the need to create more ATP?

    (I also got really severely depressed and agitated (and much, much weaker) when my docs tried a few different antidepressants back in 2000, and then recovered/rebounded to about 70% when I got off them and started a combo of vitamins, amino acids, etc.)
     

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